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The journal Pediatrics has published a new study: “Temporal Trends in Survival Among Infants with Critical Congenital Heart Defects.” You can read the article’s abstract here. See below for a summary of the findings from this article.

Main Finding from this Study

For infants with critical congenital heart defects, survival up to one year of life has improved over time. However, the chance of these infants dying is still high.

About this study

Why is this study important?Some babies born with a CCHD look healthy at first. They can be sent home with their families before their heart defect is found. In the first days or weeks of life, these babies can have serious problems and will often need emergency care. Screening for CCHDs soon after birth can identify some infants with these defects before they show any signs or problems. After they have been identified, these infants can be seen by heart doctors and receive the treatment they need.

In 2011, the United States Secretary of Health and Human Services approved adding screening for critical congenital heart disease to the recommended list of health conditions that babies are checked for soon after birth (also known as newborn screening). To measure the effects of this screening, we will need to be able to compare survival rates of infants with CCHDs before and after screening becomes common. This study provides important information about survival of infants with CCHDs from 1979-2005, before screening started. This study also helps us to identify what factors affect survival.

Basics about Critical Congenital Heart Defects

What are critical congenital heart defects?Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year. About 1 in 4 babies born with a heart defect has a critical congenital heart defect (critical CHD, also known as critical congenital heart disease).1 Babies with a critical CHD need surgery or other procedures within the first year of life.

How can newborn screening help babies with critical CHD?Some babies born with a critical CHD appear healthy at first and can be sent home before their heart defect is detected. These babies are at risk of having serious complications within the first few days or weeks of life and often require emergency care. Newborn screening can identify some of these babies so they can receive care and treatment that can help prevent disability or early death.

Newborn screening for critical CHD involves a simple bedside test to determine the amount of oxygen in a baby’s blood. Low levels of oxygen in the blood can be a sign of critical CHD. Critical CHD screening has begun in some states, and laws requiring this screening have been proposed or passed in other states. You can see what is happening in your state here.

What were the study results?For this study, researchers used data from the Metropolitan Atlanta Congenital Defects Program (MACDP), which is a population-based tracking system for birth defects among babies born to residents of metropolitan Atlanta. This study looked at infants with heart defects born in Atlanta, Georgia from 1979-2005.

Over 1 million babies were born during that time period, of which about 7,000 were born with a congenital heart defect. Nearly 2,000 (about one-quarter) of these had a CCHD.

Among those without chromosomal anomalies or other birth defects, about 75% of those with a CCHD survived to one year of age. About 69% survived to 18 years of age.

Survival for infants with a CCHD improved over time. From 1979-1993, about 67% of infants survived to one year of life. Because medical care and treatment have gotten better over time, from 1994-2005, about 83% of infants survived to one year of life.

For babies with a CCHD, certain factors were related to a higher chance of death before one year of age:

if they were born earlier in the time period,

if they were diagnosed sooner after birth (which might be because they had a more severe defect),

if they had a younger mother, and

if they were born at a low birth weight.

Heart Defects: CDC’s Activities

Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:

CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC worked with New Jersey and Georgia to assess their ability to track CCHD screening. CDC is also helping states and hospitals to better understand how much hospitals spend for each baby screened.

CDC promotes collaboration between birth defects tracking programs and newborn screening programs for CCHD screening activities. State birth defects programs collect data on CHDs and could help evaluate the effectiveness of screening by looking at false positives (babies who failed the CCHD screening but do not actually have a CCHD after further evaluation) and false negatives (babies who passed the screen suggesting there was no CCHD but actually did have a CCHD).